Leslie McIntyre – Thrive With My New Reality

As I sit down to write this, I realize that it is probably better for me to wait until the morning time to write. Let me explain. As my Ataxia has progressed, I have less energy and more brain fog and depression as the day progresses. It is 5:30 right now and the sun is going down, and so should I!

I am very blessed to have a flexible work schedule that allows me to work from home and only requires 10 to 15 hours a week. I am also taking classes with the commission for the blind here in the state of Oregon, USA. I have been taking classes for 3 quarters now. I will probably finish up in another six to nine months. The disability community has been a total lifesaver for me in so many ways! They have shown me that my value in the world as a human being is not based on what my body physically can or cannot do. Let me explain. As with many of us, I grew up in a society that placed a lot of emphasis on physical and academic prowess here. As did many of us, I internalized this ableism and it became a part of my identity. So when Ataxia began to take away some of my previous abilities. I was desperate and confused and extremely depressed. I became involved in an abusive marriage because I believed that I was not going to be able to care for myself all my children, oh, and so I had no other option but to marry him. Before my Ataxia, I was a very confident, smart, and strong young woman and I was becoming the person I wanted to be. Once my symptoms started progressing and my diagnostic journey began, everything in my world changed in an instant! I was having more and more trouble with my activities of daily living, I had a newborn and a nine-year-old, and was homeless and in Arizona in the middle of the summer! I was slowly beginning the journey of totally losing myself. I was trying to keep up with a diagnostic process that was taking years and years, across state lines and through homelessness. At this point, the doctors in California were still fairly certain that I had multiple sclerosis so I was on daily injections (this was 25 years ago).

We finally made it a Tony town in rural southern Oregon, USA. It was a complete and total culture shock! The internalized ableism that I had acquired in a large city in California was nothing compared to the external ableism of this small town in Oregon! I am also a female, and that just made things worse. Everyone around me either pitied me (my church) or despised me (the “townies”). I did my best to try to fit in and be the person I thought they wanted me to be.

At this point, my Ataxia was not progressing very quickly. I still had most of my vision and I was in a wheelchair, I was quite active. I was not working outside of the home or going to school. So all of my energy was devoted to keeping house, raising my kids, and keeping my husband happy.

In 2010 my marriage dissolved, finally (that would require writing a whole book all by itself! 😂). I believe the divorce was finalized in 2012. I moved up the road to a bigger small town and he went off to prison (I told you it was a long story!).

All of this stress and lack of any real medical care were taking a toll on me. I was very blessed and God put some very supportive people “in my world”. They make it possible for my kids to survive through a very difficult time.

Fast forward to the present day. Things are finally getting better and I am becoming the person I was always meant to be. I mean, things have declined a lot for me physically; I have lost a good portion of my vision and am considered legally blind now. I am also dealing with some chronic pain from injuries that my rigid and spasming body won’t let heal, but I have made some pretty major life changes. It seems to be paying off. For the first time in a long time, I am not fighting the urge to die from the time I wake up until the time I go to bed!

Don’t get me wrong, it is not an easy road for me or any of my loved ones. Living with ataxia is A LOT of work for us. Being blind, incontinent, in a wheelchair, and living with chronic pain is not always a joy ride through happy town, but those symptoms are easier for me to deal with now. The constant fear, anxiety, and depression made all of my symptoms 10 times worse!

I have done many things that have helped with my symptom management: eating a mostly organic vegetarian diet, drinking TONS water and herbal teas, exercising and stretching every day taking a bunch of vitamins (B Complex, vitamin C, lion’s mane, D3, multivitamin). I also take Dantrolene and Prozac which are prescription western meds.  Physical therapy, massage, and chiropractic have been the most helpful modes of physical treatment for me BY FAR! Counseling and talk therapy have been very impactful for me. When I first learned about Ataxia, I was primarily focused on the physical progression. What I have learned over time, is that my physical, mental and spiritual health are all very closely related and each one affects the others.

The most important aspect for me, however, is the spiritual aspect of this journey. I don’t mean in a stereotypical way, though attending church is a definite part of my schedule, I mean living my life with intentionality and mindfulness. Being grateful, all-day-everyday. Gathering resources so that I can help others. Being a voice for the voiceless really “seeing” people for who they are: which also helps me see who I am! The people in the disabled community and the Oregon Commission for the blind have all played a large role in my ability to not just survive, but thrive with my new reality! Thank you, God!!!!